Dropping in from Epilepsy board

[Aurora]

Hi-- Just had my 4th TBI. Three of them from epileptic seizures, which means I'm vulnerable to more. I hate being back in this state--can't concentrate, can't put things in sequence, short term memory evaporates, and lots of little "white out" moments. About to start using PEAT, special software for the brain injured that runs on a palmtop and actively reminds you about your life. Over and over until you let it know you've done whatever it is.

This time I had a seizure while at the Vocational Rehab office applying in order to get them to pay for the PEAT to deal with effects of the last three TBIs. I landed on my face on a vase on her desk from a standing position. The last two times I went down straight onto the back of my head onto a concrete floor. One time slightly broken by my shoulder.

Realy discouraging. My last one, in Nov 2005, I don't remember most of two months and I needed people with me allt he time because I couldn't remember sharp was sharp and hot was hot. This one isn't quite that bad, but I'm not remembering my days once they're over.

So I came over here to be among my head injured people, so I wouldn't feel so alone with this.

Aurora

[Discododi]

Hi Aurora,
I read your post on the Epilepsy forum as well. Have you considered a protective helmet of some sort to protect your head when you fall during a seizure? I ask this because I have worked with TBI survivors in the past, and I have seen some survivors wear these "helmets" in everyday life post injury.

I know that some closed head injuries require removing a piece of skull to allow for swelling of the brain, and many times these folks have helmets to protect the healing portion of the brain. (Example: Bob Woodruff news reporter injured in Iraq. He had severe swelling which necessitated the removal of a portion of the skull to allow for swelling. While he was recovering from this surgery, he wore a biker style helmet to protect his brain from further injury.) In fact, in this day and age, "bike" helmets are a fashion statement.

In 2000 I had a crainiotomy to remove a tumor. I had a funny hairstyle there for a while, while waiting for my hair to regrow. It was in the winter, and I never really knew what it would be like to not have hair in the winter time!!!!(FREEZING!!!!!:eek: ) I wore many different hats and scarves to retain body heat.

Please consider the helmet idea until your seizures are better controlled. You cannot afford to have any future brain injuries due to seizures.

Best wishes, and take care, Dodi

[Aurora]

Hey Dodi--

[Aurora]

Hey Dodi--
Thank you. I've been thinking about your response for thelast few days. I have wrestled with thisone--my tonic-clonic seizures sually come about a year apart, and soit feels hard to take precautions every day, even though the consequences are so big. I have always hated wearing hats--my head gets claustrophobic--so the ideaof a helmet hasn't appealed much, but I did buy a couple of hockey helmets a year and a half ago, before I went on meds. So I took your words to heart and have begun with a compromise. I wear the helmet whenever I leave the house. Not that I couldn't get injured here at home, but my wood floors are less drastic than concrete at least, and one step at a time. Anyway, thank you for expressing so much caring and concern. It made a big difference, and I acted on your advice. Be well, Aurora

[Discododi]

Wishing you well ((((Aurora)))).